Three years of remission, fewer scans in my future

Last fall I reserved a place in a University of Utah-sponsored tour of the D-Day Beaches and battle sites in Normandy. It was an amazing trip, led by a retired Colonel and our group of 17. It was humbling to stand on Omaha beach at low tide and look at the 500+ yards those Americans had to walk under murderous crossfire before they could even fire any weapons. Our guide told us that we could draw a circle with a 10 foot radius anywhere on that beach and it would intersect with a spot where a GI died on June 6, 1944. Yet they persevered and within six hours had broken through the beach defenses, starting the liberation for France and Western Europe. My 10-year old mother was living with her family in occupied Holland and eagerly followed the news of the allied invasion, eagerly awaiting the arrival of the American soldiers. It would take another eleven months for Germany to surrender. Six years later, my mother and her family emigrated to America. She carries with her a profound gratitude for the soldiers who fought to give her and the rest of Europe her freedom. As I stood on that sacred sand and later at the American Cemetery, I uttered a prayer of gratitude for those GIs.

The D-Day tour was a week long. I decided that I didn't want to just spend a week in Europe and considered my options, finally settling on Croatia. After briefly considering renting a motorcycle and exploring the country on two wheels, I realized it would be better to be joined by family. I offered to pay for the flights and lodging, and three of my four kids accepted (My oldest, Chelsea, is expecting and was unable to join us.) Each of the kids selected a different destination for the first week in Europe (Amsterdam and Prague for Spencer; Switzerland and Northern Italy for Kirsten and Jason; Paris and Milan for Garrett), then we all met in Dubrovnik. We explored the Adriatic Coast, going from Dubrovnik to Korcula to Hvar to Split. Everyone seemed to have a good time. It was also a bit poignant, as I realized that it might be the last time that all of us would be able to visit Europe as a family.

Last Thursday, I had another scan (number 56 for those keeping score). It was routine. Dr. Maughan got the quick readout and told me that there was no sign of any metastatic disease. This remission started in June 2020, with the elimination of my last persistent tumor through radiation. Dr. Maughan was pleased to mark my three-year anniversary of being disease-free. We discussed the big question: how durable was this remission. Dr. Maughan drew upon the studies of metastatic melanoma and renal carcinoma -- two cancers where nivolumab had been tested on patients prior to my first enrolling in the clinical trial in January 2015. He said that, for a small subset of each cohort (14% for melanoma, 7% for renal), patients had a complete and durable response. If those patients made it to 24 months without a relapse, then the likelihood of relapse dramatically decreased. Put another way, the Kaplan-Meier curve of the cohort flattened after 24 months. Dr. Maughan was cautiously optimistic that, because I was disease-free after 36 months, the odds of my relapsing were very low. He proposed, and I agreed, that we wait six months for the next scan, and stay on that schedule for two years. If I make it to five years without a relapse, then we'll discuss extending the period between scans to a year. 

This is a dramatic shift from the past eleven years. Wen I was first diagnosed with metastatic disease in April/May 2012, my odds of dying within 2 years was 80%, and 95% odds that I'd die within 5 years. Of course, that data was accumulated before immunotherapy revolutionized cancer therapy. Plus I have had the very good fortune to have received a complete response. I had one post-immunotherapy relapse in early 2018, and it took another two years and four months before I was once more NED (no evidence of disease). 

In the past few months, as this emerging promise of a durable remission became more clear, I have shifted my life view from waiting for death to looking forward to life. I have been given a new lease on life, and I am still adjusting my mindset on how to live it. Stay turned for future developments.

This is not to say that everything is peachy-keen. Two of my three scans had some troubling non-cancer findings: my neck scan confirmed that my left vocal cord was still paralyzed, and I had "moderate left spinal canal and neural foraminal narrowing at C3-C4. And my chest scan noted a hiatal hernia, and my lungs showed "moderate multiregional mosaic attenuation pattern in the lungs, suggesting a small airways or small vessel disease."

 

I emailed Dr. Maughan and Dr. Slade (my daughter) about those findings. Dr. Maughan said that he was focused on looking for metastatic disease and apologized for not discussing the non-mets findings. He explained that I had increasing arthritis in my neck, that I might be having some acid reflux from the tiny hiatal hernia, and the lung inflammation could either be secondary to that, or more likely the residue of a cold. I could follow up with a GI doc or pulmonologist if the problems persisted. Chelsea was more definitive: I'm getting old and had a cold. Don't sweat it.